Nowadays in countries with advanced medical care, many hemophiliacs never learn enough about our condition--about self-care and prevention of injury. It is critical that youngsters learn to avoid joint problems that can linger a life-time and cause chronic pain, plus the reasons for and importance of treatment. Not every young man needs to play tackle football or climb mountains. Encourage reading and development of positive social skills, things we all need in life.

I am looking for an oral surgeon familiar with Hemophilia in the Titusville/Orlando, Florida. I am a Hemophlia patient (Factor 11) def. and have a tendency to bleed alot.. My dentist said I would need a transfusion before, and one unit after the procedure. So we are talking about a two-three day hospital trip for me. So far, I have no recommendations for anyone close by. Not sure what to do, as the work needs to be done asap because of constant infections.

Any advise would be appreciated… read more

I posted an in detail story about what’s happening, but in short. I need multiple surgeries and I am constantly being canceled by the oncologist for numerous reasons (not financial) for some ridiculous reasons such as dates, locations, etc. no referrals or rescheduling, no nothing, just cancels the surgery and surgeons eventually get annoyed and back out leaving me scavenging for other surgeons. Which most once they hear hemophilia refuse to do the surgery because apparently this is a common… read more

How is Hemaphila C different from other hemophilia conditions

I am curious, my husband has O negative blood and his friend also has negative blood. These are the only 2 hemophiliacs I know. I was wondering if there is a correlation with negative blood and hemophilia? Also, my husband has a MTHFR mutation, which makes his body less able to detox, among other things. I do not know about his friend’s status on this, but we found out through 23&me and genetic genie. Does anyone else know their status as far as blood type and/or MTHFR mutation, specifically 677… read more

My six-year-old daughter has severe hemophilia A, which we all know is extremely rare. So I’m looking to connect with women who are in the same position. As my daughter gets older, she’s starting to ask more questions about her condition and I would love to be a bit more prepared to answer her questions, and share experience from those with first hand experience managing hemophilia as a woman.

Are there any older guys with haemophilia that are experiencing chronic pain in both elbows. Right hand small finger has pins and needles feeling?